2 posts tagged “Lithium Carbonate and ALS”

Raise Your Awareness of ALS (Lou Gehrig’s Disease)

Posted May 20th, 2011 by

May is ALS Awareness Month. To help spread the word about this progressive neurodegenerative condition, which affects approximately five out of every 100,000 people worldwide, we wanted to tell you a little bit about our patients with ALS (amyotrophic lateral sclerosis).

Click to watch a full segment on the Heywood family from the nightly news show Chronicle, which airs on WCVB-TV in Boston

Due to our founders’ personal experience with this disease, ALS was the very first condition to have a home at PatientsLikeMe when we launched in 2006.  Five years later, our ALS members now represent the largest ALS patient population in the world, capturing 10% of all newly diagnosed patients in the U.S.

Here are some quick facts about ALS, as reported by our members:

What is PatientsLikeMe’s ALS membership like?

What are the top treatments?

What are the major symptoms?

What are ALS patients talking about?

Speaking of Lithium Carbonate, we are very proud of our patient-led research study on the drug that was published in the scientific journal Nature Biotechnology last month. The findings, which refuted a previous clinical trial, garnered a good deal of media coverage for not only showing the real-world effects of the drug (no impact on ALS disease progression was found) but also how patient-reported data can accelerate medical research.

Click to watch the full interview with PatientsLikeMe Co-Founder and Chairman Jamie Heywood, who discusses ALS research and the concept for PatientsLikeMe

Finally, to put a face on ALS, we’d like to share a current news story here in Massachusetts, where PatientsLikeMe is headquartered.  Former Massachusetts Governor Paul Cellucci talked about his ALS diagnosis for the first time this week on the nightly news show Chronicle.  We were honored to have been featured in the WCVB-TV piece, which included a segment on Stephen Heywood’s battle with ALS as well as an interview with PatientsLikeMe Co-Founder and Chairman Jamie Heywood.

Watch the full four-part piece (entitled “The Campaign of His Life”) to see how both Governor Cellucci and the Heywood family are fighting back against ALS.


PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin

Posted December 21st, 2009 by

The 20th International Symposium on ALS/MND took place (December 8th-10th) in Berlin, Germany. This is the 4th ALS Symposium attended by PatientsLikeMe, and certainly the most exciting in terms of new findings. The annual symposium is a tremendous opportunity for researchers from around the world to meet and share new developments – it’s the big event for the ALS research community and attracts scientists from across the globe.

PatientsLikeMe Chairman and Co-Founder Jamie Heywood and Research Scientist Timothy Vaughan, PhD presented three posters at the conference with some of the findings we’ve generated this year. The highlight was a poster describing our analysis of the patient-led study of lithium carbonate. Using new techniques that compared patients on lithium to carefully matched control patients, we determined that the drug had no effect on the progression of ALS. The poster was well received with good feedback from experienced experts in the field, and we are currently working on writing up a full analysis and description of our techniques.

berlin-lithium-poster

Our second poster described a small survey we did about emotional lability, also known as pseudobulbar affect (PBA). We found that although many ALS patients suffer from unusual or uncontrollable outbursts of laughter, crying, or anger, patients aren’t discussing these episodes with their physicians.

berlin-pba-poster

Finally, we presented preliminary results from our Familial ALS Genetics Study. About 20 patients have told us about ALS-causing mutations they have, and so far, the data closely resembles other findings reported in the scientific literature. The PatientsLikeMe difference is that patients who know their mutations can find and connect with other patients like them for the very first time.

berlin-genetics-poster

We’d like to thank our research team for all their hard work this year. And of course, we’d like to thank our patients for sharing their data and making each of these studies possible. Here’s to further understanding and continued breakthroughs in 2010!

PatientsLikeMe member jheywood PatientsLikeMe member pwicks PatientsLikeMe member tvaughn